Remembering

I am remembering today.   It is an anniversary of sorts.   Four years ago today Scott was admitted to the hospital.   I had NO IDEA at the time that it would be day one of a 6 month hospital stay.  I had NO IDEA that in 2 ½  months he would have a heart transplant and come VERY close to death.   I had NO IDEA how much I would depend on others and on the Lord for help.   I knew it was bad but I really didn’t know what was in store for our family.

I still have guilt about that day.   Scott had a hernia surgery 3 days before.   Although it was just a day procedure we knew he had increased risks because of his heart failure.   We didn’t know that the stress of the surgery had dramatically decreased his heart function and his other organs were starting to shut down.    I could tell Scott didn’t feel well.  He did just have surgery!   In my defense, he hadn’t felt well for a long time either.

The guilt comes from my treatment of him that day.   I was impatient and annoyed.   I was busy caring for our four children and I felt like I had one more needy, grown-up to care for too.   I had a church meeting to attend that evening and I got everything ready so he could be ‘in charge’ of the the kids while I was gone without having to do much at all.  I was in a hurry to go out the door when Scott asked me in a pathetic voice to get him a drink from the fridge.    I remember grumbling to myself ‘He can’t even get his own drink!?   I’ve been doing everything today and I’m in a hurry.’   I did get him that drink and rolled my eyes on my way out.

I am ashamed to say that I even complained to some friends about Scott’s neediness when they asked me how I was.   I was not compassionate at all.

Can you imagine how I felt when I came home and found my brother there caring for the kids!  Scott had called my parent’s home and told them he needed to go to the hospital.  My dad was at the ER with him.    I hurried to the hospital where we found that his kidneys were failing due to lack of blood flow.   We met with the cardiac transplant team the next morning and started the process of getting a new heart.

I can only now share this story because I have a little perspective now.  I still feel guilty for my bad attitude but I think I learned to be more compassionate because of the experience.   I hope I am more patient and less judgemental too.   I don’t know how it feels to be chronically ill.   I don’t know how it feels to have a failing heart.   I don’t know how it feels to be stuck in a hospital room day after day and be poked and hooked up to stuff and woken up in the middle of the night to take my blood pressure.  I’m glad I don’t know but I hope I can be compassionate to those who have to go through tough times.  

If you are reading this make sure you let your loved ones know that you love them.     Be a little more patient.  Be a little less judgmental.  Show a little more compassion.   You don’t know what tomorrow may bring.

Three Years!!!

I have no good excuses for not updating this blog. No news is good news. The good news is that Scott has been feeling steadily better for a year now! A few days ago we celebrated his 3-year anniversary with a new heart.

At the very beginning of 2011 Scott's main immunosuppressant was changed from Sirolimus back to his original Tacrolimus. Who knew what a differnce that would make?! After he switched to Sirolimus in early 2010 because of the BK virus, he started having digestive issues, lost 30 lbs that he didn't have to spare and felt generally fatigued and blah. I have to admit that it was a bad time. He cut back on work, was kind of cranky and didn't feel up to much. It was way better than not living, slightly better than heart failure but significantly worse than he feels now.

Each month of 2011 Scott felt a little better. The digestive issues resolved and his energy increased. He gradually added hours to his work week, he joined a gym and he started to have a spring in his step. I cannot believe the difference! He finally knows how it feels to be well. He comes home from the gym surprised and excited about how many laps he ran, how much weight he lifted and how much energy he has left after a workout. I wish I had the motivation he does! The contrast between well and not well is very obvious to me now. It's hard to smile and have a good attitude when you don't feel well. It takes a lot more effort than when you feel good. Now that Scott feels good, he is happier. The chain reaction is that I am now happier, our kids are happier and life is better.

THAT is the way a heart transplant is supposed to work. We met a few people with heart transplants while we waited on the wait list. They all seemed so normal and healthy. There was a time when Scott had been in the ICU for weeks that I felt frustrated. I felt that the only heart transplant experiences we had heard of were so much easier than what we went through. I watched others receive transplants and come and go while Scott had many setbacks and struggled to make tiny improvements. Truthfully I wondered if it would ever be worth it. I felt that life was just not fair. Why did he have to be in the ICU for almost 7 weeks after his transplant? Why did his kidneys have to fail? Why did his new heart not work right away? Why did he get the BK virus and cellulitis and Colitis??? I still don't have the answers to those questions but it just doesn't seem to matter now that those issues have passed.

The fact that someone elses' heart beats inside him will always be a part of our lives. He will always be immunosuppressed. However, sometimes I forget for days that Scott had a heart transplant. Health issues do not permeate every aspect of our lives anymore. Thankfully Scott remembers at least twice a day to take his medications. He also remembers when he can feel blood pulsing in his fingertips after exercise or he can walk briskly without getting out of breath because of the young, healthy heart he has been so blessed to receive. He is no longer fragile. He is strong. He is happy. I am happy.

We travelled to Italy in September. This is us in Milan on our last day. It was all worth it!